Worry about meeting the consultant on Monday

User

Posted 24 Feb 2022 at 13:10

My OH is 8 weeks post op and doing great. He’s 73. We saw the surgeon last week and said fine to get back to the gym now and playing golf etc. Everyone is different but it really was a surprise to us how well he was after surgery. I was with him all the time as we stayed in London 3 weeks post op. He could have managed on his own throughout the day…but I like to fuss 🙄😂

He’s doing great with continence too. ED is not fixed…he had 50% nerve sparing. We have the pump which we are just starting with, but I don’t want him to start sildenafil as he has been getting occasional rapid heartbeat and feel it might make it worse. He was given HT for 6 months pre op so his libido has completely gone, he has no interest at the moment so I think that makes it more difficult for him to want to try with erectile function. I keep telling him he needs to keep blood flow to the area as when he gets some testosterone back and wants to use it he won’t be able to 🤦🏻‍♀️

Main thing is the op went well, he’s feeling well and with a lot of luck he might not need further treatment and will be with me for many many years to come.

Best of luck to you and your husband on your decision and hopefully he will talk more with you. I think that would have been the most difficult part for me if he had shut me out. Take care x

User

Posted 24 Feb 2022 at 15:08

I found the process of being diagnosed unbelievably stressful (as some regulars may recall 😁), not helped by the fact that my prostate cancer investigations also uncovered two other life-threatening conditions, but once treatment actually got underway it was all pretty straightforward. It can be a huge mental shock to be told you've got cancer (two different cancers in my case) and everyone needs to find their own coping mechanism to deal with it. You do find a way, though, because you've got to.

Cheers,

Chris

User

Posted 25 Feb 2022 at 18:39

He had the bone scan today - according to the receptionist the urologist will have the result on Monday as my husband is high priority. Is that normal or are they hiding something from us? I know we were told he is T2a M0 Gleeson 4 + 3, but would the consultant tell the truth if it is terminal or would he try and hide it until it is totally obvious? Sorry for being negative, but this whole thing is really doing my head in especially as we are not getting answers (according to the NHS website we should be able to see his biopsy and pathology report).

User

Posted 25 Feb 2022 at 19:27

For goodness sake, you are sounding a little paranoid now. Consultants don't lie to people; if your husband's bone scan finds something they'll tell him. His diagnosis is that of a pretty innocuous case of prostate cancer. What on EARTH makes you think that there's some sort of sinister conspiracy to hide the truth from you?

TRUST your doctors - they're the people who are going to be treating your husband, and from the information you've provided the treatment will be with curative intent.

Best wishes,

Chris

User

Posted 25 Feb 2022 at 19:42

If he is T2a M0 with a Gleason 4+3 and a PSA of 8, it is not terminal! And why would the consultant 'not tell you the truth'? The consultant is waiting for the bone scan results to complete the picture before telling you the full facts and outlining your husband's options. If your husband remained untreated for months, it would probably make no difference to the outcome. Prostate cancer is very very slow-growing. In the meantime, you have gone into full-on panic mode. Would you be able to understand and interpret his biopsy and pathology report? I wouldn't, and I am reckoned to be pretty smart. That is what the consultant will do when you meet him / her. That is his / her job - they know what they are doing! They do it practically every day, and have no doubt treated dozens, maybe hundreds of similar cases.
What 'answers' do you think you are not getting? You will get them all at the meeting with the consultant / oncologist / surgeon. They will explain the various options for treatment and your husband will choose the one he prefers. If you have any questions then or later, the treatment team will answer them, or the specialist nurses from Cancer UK or Macmillan - just a phone call away.
In the meantime, calm down. You are not doing your husband or yourself any good like this.
I am sorry if this sounds harsh. I can tell how worried you are. But I have been through it, starting from a similar point to where your husband is now. He will get through it. He is not going to die from this. If you don't believe me, ask LynEyre. She knows a lot more than I do about it.
best wishes,
Hermit

Edited by member 25 Feb 2022 at 22:39 | Reason: Not specified

User

Posted 25 Feb 2022 at 19:42

Originally Posted by: Online Community Member

Hi DW, I have been following your post with interest. I guess everyone handles it differently...

It is a lot to take in and having just been through the early part of 'the journey' before Christmas, I can sympathise.

I was seen under the 2 week wait process and had MRI, bone scan and biopsy all within 7 days. I then had a further CT before my final options presented by the consultant.

My diagnosis offered RP or EBRT with HT.

I opted for Radiation which starts the end of April.

I am currently going along with Hormone Therapy until then.

My condition was T3a M0 and gleason 4+5 with a psa of 22.

There has been no suggestion of anything terminal (although I know where I am going if it is!) but more focussed on cure than anything else. I have no symptoms and only found out through mass testing which my wife suggested I might like to attend.

I am eternally grateful.

I have no symptoms at all and am 71 years old .

My prayer is that you both find peace in this challenging time and that you make all the right decisions with much wisdom. This forum has been amazing and although I contribute very little, I find much assurance from the contributions made here.

With every blessing for you both in the future,

Ian

User

Posted 25 Feb 2022 at 19:49

Sorry guys, I am paranoid - probably due to family history. One aunt took 10 years to die very slowly and my mum was persuaded by her heart specialist to have 2 pace makers. It gave her extra time, but she hated every moment

User

Posted 25 Feb 2022 at 20:11

The other reason I worry is the physical dhanges in my husband. It used to be the case in winter that I would sit hugging the radiator wearing wolly jumpers and he would be in shorts and T-shirt and wanting to open the window, now he keeps putting the heating on saying it is cold and complaining that he is cold in bed (despite a tog 13 quilt with an extra quilt on top and keeps shutting the window which until recently was only ever shut if we were away on holiday). The other change is even more worrying. We were camping last summer in Northumberland near Hadrians wall and he did a lot of hill walking and each time I walked with him he would very kindly wait for me to catch up. Now when we our out walking even in town I have to wait for him.

User

Posted 25 Feb 2022 at 20:27

And there is another reason why I am panicking. I had urged my brother in law (husbands younger brother) to have his PSA levels checked - he is seeing his GP next week for a referral.

User

Posted 25 Feb 2022 at 21:05

The best thing you can do is to stay calm. Panicking doesn't help you or your husband. When my husband was diagnosed we were shocked, upset and uncertain but after tears and talking we decided to tackle the whole thing as a team effort. He was 63 and his Dad had died at 86 of prostate cancer but must have lived with it for some time in ignorance.

My husband had hormone therapy and then 37 radiotherapy sessions. I went to nearly all the sessions with him to keep him company and we met a wonderful man who made us laugh and we had a lot of fun despite the treatment. He was tired after this and did get breathless going up hills but we kept walking and gradually he recovered and we had a little time when he was ok. More hormone treatments followed before he had to have chemotherapy.

We had almost ten years of a good life after diagnosis. You can become very inventive over sex and until strong hormone treatment reduced his libido we were ok. The loss of our sex life was very sad for us both but it didn't diminish our love for each other, in fact it grew stronger. You will have to be very strong and support your husband without smothering him. He is still the same person but will have to get used to his condition and process it all. In a way you will both be grieving for the future you thought you would have.

We had many many happy times and adventures and learned to adapt our lives around all the hospital trips and setbacks.

Remember to keep your sense of humour and carry on doing all you can. You have to trust your doctors and ask for advice if you need it. Keep talking and loving each other and have space and time to be alone if you need it.

User

Posted 25 Feb 2022 at 22:31

Have to say I think one or two comments above about DW expressing panicky feeling were a little harsh There is no getting away from it, the C word is pretty damn scary and it's 100% normal to feel panicky at times, regardless of whether or not you have been told everything there is to tell.

As someone who has been on the receiving end I can strongly empathise with the feeling that you are not being told everything. It is very much what I felt prior to my treatment. And it has been widely acknowledged in previous discussion on this forum that urologists and oncologists can sometimes lack the reassuring 'bedside manner' one might be hoping for.

But as others have said. the problem is, medics have to be clinical in their assessment and can only pass on information once they are in full possession of the data themselves. It is all too easy when you are in an understandably heightened state of anxiety about potential outcomes to make the assumption that the medics know more than they are letting on, and that they are not keeping you fully in the picture.

However, the chances are things may well turn out to be a lot less ghastly than seems possible beforehand. Hindsight is 20/20 vision, meanwhile until you get to that stage, your mind is always going to be beset with anxieties. It is only natural.

So please DW continue to voicing your anxieties. This forum is a fantastic resource for anyone needing advice about the dreaded PC and we are all here to help each other get through the difficult times as best we can.

For the record, I was diagnosed with PC 14 years ago and underwent a robotic RP followed three months later by RT in 2009. Though I cannot pretend it has ALL been plain-sailing ever since, what I can say is that life has never been better. Just recently though, the dreaded PC has returned, so now I await news of when to start HT treatment.

But I remain as happy as the proverbial sandboy, because if my experience of PC has taught me anything, it has taught me not to worry. Things seldom turn out to be anything like as bad as it seems they might beforehand, and that was certainly how it turned out for me.

Edited by member 25 Feb 2022 at 22:35 | Reason: Not specified

User

Posted 26 Feb 2022 at 00:50

Originally Posted by: Online Community Member

Neither of these are considered symptoms of advanced prostate cancer - to be honest, they sound like symptoms of long covid?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Feb 2022 at 01:07

Originally Posted by: Online Community Member

I think that the diagnostic process is a bit more complicated than you imagine. The radiographer is not a doctor and does not usually interpret the images they have just taken; they send them to a radiologist who will assess and then share their professional view with the oncologist. The oncologist then decides the diagnosis either with the radiologist or at a multi-disciplinary team meeting.

You should expect to see the biopsy and scan results when the oncologist writes to the GP setting out the diagnosis and treatment plan. If you want to see the actual scan images, you can ask the oncologist when you next see him or her although I think the hospital can charge you for them and you need to give them a chance to have received, analysed them and placed them in his medical file. Under GDPR / DPA, it will be your husband who has to request them.

Doctors do not keep information from patients - in fact, the code of practice in the NHS is the opposite and it is sometimes the case that they feel obliged to tell patients the bad news that the patient said they would prefer not to know.

Also, not particularly relevant to your situation but useful for you to know that 'terminal' and 'incurable' are very different things. A man with advanced prostate cancer may be incurable but live for many, many years - we have members here who are still living good lives for 15, 17 years after an incurable diagnosis. Terminal means that all treatments have failed, active treatment has been stopped unless it improves quality of life and the person is expected to live for less than 6 months.

Edited by member 26 Feb 2022 at 01:12 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Feb 2022 at 08:24

We both have had booster jabs and he has been tested (last just before the biopsy) and the tests have always been negative.

User

Posted 26 Feb 2022 at 08:28

Hi Everyone, thank you for all your support. I helps a lot. Especially thank you to LynEyre for the explaination. That has helped a lot. Why cannot the hospital give us a timeline for when thing should happen? Would reduce anxiety.

User

Posted 26 Feb 2022 at 12:21

Hi Everybody, sorry for all the negative thoughts, but currently all my positive thoughts are exclusivly reserved for my husband.

User

Posted 26 Feb 2022 at 13:26

DW, no need for apologies, we have probably all experiened the frustration of not getting answers or results. I expect lots of things happen that can delay getting information to the patient. I suspect many consultants have a weekly routine, my consultant does MDT meetings on a Friday, if the MDT team have not got all the info I suspect it could delay making recommendations and getting the the information to you.

No doubt the disruption of covid is not helping.

Thanks Chris

User

Posted 26 Feb 2022 at 13:51

Hi DW, don't worry about unloading your negative thoughts on this forum. There are plenty of members here we all have our own experiences and thanks to this forum can empathise with anyone elses varied experiences.

I'm of the opinion that it ain't worth worrying until you know you have something to worry about, and even then it ain't worth worrying unless you personally can do something about it.

Get the full diagnosis, get the proposed treatment plan, then research the options. I suspect your husband may either be clamming up emotionally or just have the same attitude as me, outwardly it would look the same but inwardly they are totally different attitudes. Ask him if he thinks you are making more fuss than he thinks it deserves and if he says yes, don't make a big fuss about it (at least not to him, but say what you want here).

Dave

User

Posted 26 Feb 2022 at 18:09

Hi Dave64diag2018, yes he complaints I make a fuss but also admits it makes him feel better so I am going to carry on making a fuss. The other thing I have done (and he at first complained, but after I gave my reason admitted that it is a good idea) is make him an appointment with a physiotherapist specialising in pelvic floor exercises so we know that he does those correctly. Not leaving a stone unturned to make sure he has a good quality of life when this is all over. Just hope it is over by June as our son & family are coming over then from the USA for a visit and he is really looking forward to their visit.

User

Posted 26 Feb 2022 at 23:57

I absolutely agree with your comment that doctors are obliged to tell patients the truth now.

Sadly my husband was given the devastating news that his condition was terminal by telephone and given the prognosis of four months or less. It was totally unexpected, although we did worry as his chemotherapy was stopped due to Covid, and the news destroyed all hope that my husband had left and we were left with this news without face to face contact as it was given in the first lockdown.

I think my husband might have been able to fight for longer if he had not been told. Although he valued the truth and it gave us time to sort a few practical things out, the news did take everything out of him and the end came after 4 weeks instead of 4 months.

However in the early days we felt that the consultant was honest and clear and we could ask as many questions as we wanted. The specialist nurses were also fantastic with their support.

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